麻豆社

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27th February 2024

bbc.co.uk/accessall

Access All 鈥� episode 93

Presented by Emma Tracey

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EMMA-听听听听听听听听听听 I played bingo at the weekend. You might be quite surprised to hear that seeing as it鈥檚 pretty visual by nature. You use a thing full of ink to check off numbers on a thing, as someone reads them out off of balls that come out of a machine. So, yeah, that was fun. It was a little local community event. And my oldest son got the inky thing, the dabber and promptly exploded it all over himself and some other people and the table. And there was an entire mums WhatsApp chat going on the next day on how to get ink out of faces. Lemon juice was suggested when the acetone didn鈥檛 work. There you go, that was that. I can鈥檛 see my bingo book, or whatever you call it, I think it鈥檚 a bingo book, so my friend Michelle kindly filled it out for me, and her own, and I think one of her children鈥檚 as well, so she was doing three in a row in front of her. And I won I think the second line, and I got to go up and get my prize.

But I鈥檓 a bit, you know, kind of, day after the event I鈥檓 a little bit anxious that maybe I didn鈥檛 really win if she filled it out. It was my book, but she filled it out, but I won. And it was a bottle of champagne, and a confetti cannon went off and there was confetti all over my head and there was music and there were mascots dancing around for me because I won. But she actually filled it out. I didn鈥檛 win, did I? Or did I? My other friend, Rebecca said every time you win at bingo you share your winnings with the people you鈥檙e with, and I haven鈥檛 shared my champagne either yet. So, I feel a little bit like a fraud. I think I should have the champagne because I was sitting there unable to do any of it. They were all playing bingo around me going, 鈥淥oh, ooh, what was that number? Ooh, which bit of the book is that in? Ooh, can I help you with that? Oh, blah, blah, blah鈥�. And I was just sitting there like a proper blind person waiting on each line to finish. And I actually invited everybody to the bingo because it was a fundraiser for something that I鈥檓 involved in, so I organised it and got everybody there, so I created this inaccessible scenario for myself and then won some champagne. [Sighs] maybe I should give the champagne away.

MUSIC-听听听听听听听听听听 Theme music.听

EMMA-听听听听听听听听听听 Hello, I鈥檓 Emma Tracey. And you鈥檙e listening to Access All, the 麻豆社鈥檚 disability and mental health podcast. If you鈥檙e catching us on 5 Live you鈥檙e very, very welcome. Hit that subscribe button on 麻豆社 Sounds or wherever you get your podcast from and we will come down onto your device every single week. This time I鈥檝e been out and about having a great time with a young man called Laith. Let鈥檚 hear a bit more about that. On with the show!

CLARE-听听听听听听听听听听 Hello, welcome to 5 Live Drive, Clare and Tony with you for the next three hours. And I鈥檓 out of the office today. Welcome to the National Star College in a very wet Gloucestershire this afternoon.

EMMA-听听听听听听听听听听 Uh, you haven鈥檛 got the wrong show. It might sound like it but you don鈥檛. We are actually talking today about 5 Live鈥檚 guest editor from the other day, Laith. And he, alongside me and Access All, did a bit of a 5 Live Drive takeover. And it was all about getting the right support with education and with the transition between school and what happens after when you鈥檙e disabled. Now, Laith sometimes uses communication aids and that鈥檚 what you鈥檙e hearing in these clips:

[Clip]

LAITH-听听听听听听听听听听听 My name is Laith. I am 20 years old. I have cerebral palsy and I am disabled, but that is not all I am. I am using my communication aid to talk to you today. I have hopes and dreams just like any other 20 year-old, but too often I鈥檓 made to feel like I carry a price tag, and the local authorities have to barter with my price.

[Clip]

EMMA-听听听听听听听听听听 Now, Laith is at National Star specialist college in Gloucestershire, and he was asked to be guest editor because he had a few things that he really wanted to get off his chest. And that included the struggle to get support with education, and that crucial transition, which we all know about, between child and adult services. The response to his show was phenomenal, so much so that they didn鈥檛 actually do the news and sport at 6:30. So, we thought that we would bring back man of the moment Laith to find out how things have been over the weekend. Hi, Laith, how are you?

LAITH-听听听听听听听听听听听 Hi. How are you?

EMMA-听听听听听听听听听听 I鈥檓 good. I鈥檓 still, sort of, coming down adrenaline wise from our brilliant, brilliant day last week. What has the reaction been from your college friends, Laith, to your show?

LAITH-听听听听听听听听听听听 Everyone has been blown away by the radio show. Even the friends I live with have been saying, 鈥淵ou are amazing and you are famous. You should run for parliament鈥�. The morning after the radio 5 Live show tutors and staff who I have not even met before came up to me and said what a fantastic job I did.

EMMA-听听听听听听听听听听 You did do a fantastic job, honestly. For someone who鈥檚 still at college and someone who鈥檚 20 to be talking about special educational needs and disability and transitions and all that, I mean, I don鈥檛 think I knew what any of that meant until I was so much further on, so I think you鈥檙e doing really well and really, sort of, involved and you know what you鈥檙e at already.

听听听听听听听听听听听听听听听听听听听听听听听听 Now, Laith lives and studies at National Star. And I got to have a look around the college last week. We went to the tuckshop, called Starmart, which I like the name of. We went to the therapy area, which didn鈥檛 feel as clinical as I was expecting, and nobody was complaining too much about their physio. But I can tell you this now, I鈥檝e seen the accommodation as well, very fancy, en-suite bathrooms in some of them etc. It was a bit more like a uni campus. It was definitely a lot different to my special school with its big dormitories and big dining halls. But it was not easy for Laith and his mum to secure his place at National Star. And his fight with his local authority was, of course, all about funding.

LAITH-听听听听听听听听听听听 I visited National Star in 2018 and knew straightaway that I wanted and needed to go there. At National Star I would finally meet people who are like me. My mum and I applied to our local authority for funding for me to go to National Star in 2019. The local authority said no, and that I had to give mainstream education a go; which I did for two years, but I felt really socially isolated. Because of my speech difficulties on top of my high physical needs nobody wanted to hang out with me outside of the classroom. In February 2021 my mum and I made the decision to get me into National Star. Then the real battle began. I came to National Star for an assessment and I was offered a conditional place. I was over the moon. Every young person with disabilities has what is called an Education Health and Care Plan. It lists what you need, and by law should be reviewed and updated annually. Mine had not been changed since I was a child. The local authority started to argue with us about my needs. We had no choice but to employ a specialist education solicitor. I remember crying at the amount of stress and anxiety I was under.

听听听听听听听听听听听听听听听听听听听听听听听听 In May 2022 we were at a standstill. The local authority would not budge. We took the decision to go to tribunal, but that can take months and I was worried I would miss a year of college and be stuck at home. By mid-July National Star had just one residential place left. There was no way on Earth mum or I were going to miss this last chance to get me what I have always wanted. We took the greatest gamble we have ever had to take, and prayed that the local authority would pay when we finally won the tribunal.

EMMA-听听听听听听听听听听 We are glad to say that Laith and his mum did win the tribunal, and Laith loves being at the college. Laith mentioned EHCPs there, Education and Healthcare Plans, which are legal documents laying out the extra support that somebody needs at school or in education. 500,000 children and young people had EHCPs last year, but it鈥檚 not always a straightforward process and lots of people have had to fight for the decisions to get the support that they believe they need. Some of them, 8,000, went all the way to tribunal, so a legal process. And 98% of those tribunals found in favour of the family, not the local authority. That was one thing lots of parents got in touch with 5 Live about. Here鈥檚 Sophie Berry talking about the 拢60,000 she had to spend on securing suitable provision for her son, Thomas:

SOPHIE-听听听听听听听听听 My son Thomas has a very rare chromosome disorder called Jordan鈥檚 syndrome, and a very high level of need. And we felt that his original school wasn鈥檛 meeting need, and we went through the tribunal process. And it鈥檚 just a bottomless pit as regards money: you鈥檙e paying for expert reports that each one can be up to 拢3,000; you鈥檙e also taking those witnesses to the tribunal with you; you鈥檙e backwards and forwards between solicitors; you鈥檙e having phone meetings with the barrister. And our tribunal actually went on for three days, so we had to pay a barrister for three days. And then we had to do the same again to get him into National Star. It is exorbitant. It is an incredibly stressful process. It is an absolute full-time admin job.

EMMA-听听听听听听听听听听 Well, Laith, we heard from you and we鈥檝e heard from some parents, but you also got to hold someone really crucial to account. Dame Rachel de Souza, who鈥檚 the government鈥檚 Children鈥檚 Commissioner, and is responsible for protecting the rights of children. Let鈥檚 hear a bit of your conversation with Dame Rachel:

[Clip]

LAITH-听听听听听听听听听听听 What do you think about the current system that makes me and my friends feel like we have a price tag on our lives and are simply too expensive?

RACHEL-听听听听听听听 I mean, that is absolutely heartbreaking to hear, Laith. No young person should feel that whatever needs they鈥檝e got. We need this system to actually be asking, how can we help, rather than what鈥檚 wrong with you and can we afford it. And I think that point about just really understanding the huge contribution that very, very seriously disabled children and young people can make as they move into adulthood as well is so important. I mean, I was in a school for children with serious disabilities in Bolton recently, and they are amazing those young people. Not only were they getting their exams and were just as ambitious as anywhere else, despite having extreme physical disabilities, they also all did work experiences, were planning for their future jobs. Many of them were studying catering, and they did tea for me and all the councillors and whatever, and it was better than something we鈥檇 get at the Savoy. And that鈥檚 just one bit of a skill that some of the children and young people there had worked on.

听听听听听听听听听听听听听听听听听听听听听听听听 So, what I would say is we need to be as ambitious for children and young people with disabilities as we do for all children and young people, but recognise the support and the funding needs to go in. And it doesn鈥檛 just stop when childhood ends. As you said, that support needs to transition into adulthood.

[End of clip]

EMMA-听听听听听听听听听听 Laith, what did you think to Dame Rachel de Souza鈥檚 responses to your questions?

LAITH-听听听听听听听听听听听 I felt that Dame Rachel was very engaged with young people through ages five to 16. She did not appear so engaged with post-16 provision. I understand that her remit is for children, but childhood and adulthood are linked as we all grow up in time. The Children鈥檚 Commissioner, the Department for Education and the Department for Health and Social all need to review how they work together to support the preparation for transition from school to college and college and adulthood. This would prevent young people being chucked off the cliff of adult social care. It would also avoid young people鈥檚 mental health from being shattered. We heard on Drive Time about a student who left National Star in July 2023, the young person was student union president and she was an independent woman with her whole life ahead of her. Unfortunately she was let down by the local authority. Sadly, she is now back at National Star and her confidence is shattered. I think better education and training is needed to be introduced to government to help councillors and politicians understand and appreciate the efforts and the work that all the people fighting for disabled people鈥檚 human right to be equal.

EMMA-听听听听听听听听听听 My goodness, you鈥檝e basically summarised everything. I mean, telling Chelsea鈥檚 story last week was one of the hardest stories of the whole show about her housing needs breaking down and her needing to go back to National Star. But you鈥檙e so, so engaged, I do think you probably will end up in politics, will you?

LAITH-听听听听听听听听听听听 Never.

EMMA-听听听听听听听听听听 Never?

LAITH-听听听听听听听听听听听 Never in a million years.

EMMA-听听听听听听听听听听 Okay, fair enough. I understand that. So, we鈥檝e heard about 5 Live guest editor Laith, but what about everyday Laith? What are your favourite things at college? And what do you do outside of class?

LAITH-听听听听听听听听听听听 I am student union president here at National Star College. In my role as president I am also a student governor and I sit on the advisory board of national staff. Away from my presidency I am studying employability and am learning about how to manage my daily life. Away from college I am very into the paralympic sport culture and I regularly compete. I also volunteer my time to work on projects to do with augmentative and alternative communication aids and assisted technology to try and make it a level playing field for people with all disabilities.

EMMA-听听听听听听听听听听 Woozers! Do you do any partying?

LAITH-听听听听听听听听听听听 Yeah, I love partying.

EMMA-听听听听听听听听听听 You love partying, okay good. I鈥檓 pleased to hear that. I mean, that鈥檚 an amazing list of things that you do outside of class, isn鈥檛 it?

LAITH-听听听听听听听听听听听 Yes.

EMMA-听听听听听听听听听听 What do you want to do in the future Laith, and what鈥檚 your plan to get to that point?

LAITH-听听听听听听听听听听听 The future is really exciting for me. And Hannah, my fianc茅e, we would like to buy a house together to live together and spend the rest of our lives in. I am currently starting to set up our own business, which will be an assisted technology consultancy and support service for people of all ages and ability.

EMMA-听听听听听听听听听听 Oh my gosh, really? So, you鈥檙e starting to set up your own business!

LAITH-听听听听听听听听听听听 Yeah.

EMMA-听听听听听听听听听听 Wow, wow! When I was 20, Laith, I was at university and I wasn鈥檛 thinking about the future at all really [laughs] to be honest with you. So, that鈥檚 so, so impressive. You鈥檝e got a girlfriend, Hannah, who you just mentioned there and who you met at college. Tell us about love鈥檚 young dream. Was she impressed with your programme? And how are your plans for living together going? Tell me all about you and Hannah.

LAITH-听听听听听听听听听听听 Hannah was extremely impressed with the show on Thursday. She did not know what I was going to say as I kept it all top secret. And when she heard me saying her name she said she was smiling the whole way through. Plans for the next steps are already well in preparation and progressing. We are actively looking for properties and it is slow, but we are confident that when the right house comes along we will know it is the right one. In terms of the social care side of things we are going to start everything in early June to get everything sorted ready for June 2025. We are not going to let the social care or continuing healthcare determine when we are able to start the process.

EMMA-听听听听听听听听听听 So mature! So grownup! I sound like an old person, I keep saying the same thing: So impressive! So mature! So grownup! I just am kind of in awe, to be honest. But I guess you have to be that prepared, don鈥檛 you?

LAITH-听听听听听听听听听听听 Yeah. [Original voice] Me and Hannah have very high needs, and we really need鈥�

EMMA-听听听听听听听听听听 Yes, is it okay if I recap a little bit? You just said that you and Hannah both need care 24 hours a day, and you want to be able to live your individual lives; you want some privacy as well so you need to plan really carefully.

LAITH-听听听听听听听听听听听 Yeah.

EMMA-听听听听听听听听听听 Okay. Definitely need some privacy I reckon. Listen, if you have anything else to say about Laith and his story get in touch. We are accesssall@bbc.co.uk. We鈥檙e @麻豆社AccessAll on X, formerly known as Twitter. And if you want to drop us a message on WhatsApp it鈥檚 0330 123 9480.

Laith, it has been an absolute pleasure to have you on Access All. Thank you for coming and updating us on your big day and your big moment and telling us a bit about your future.

LAITH-听听听听听听听听听听听 Thank you. I鈥檝e really enjoyed it.

EMMA-听听听听听听听听听听 It鈥檚 an absolute pleasure.

听听听听听听听听听听听听听听听听听听听听听听听听 It has been two years since Russia launched its full-scale invasion of Ukraine. To mark it our sister podcast Ukrainecast met Serhiy, a Ukrainian soldier who experienced catastrophic injuries when his vehicle was blown up by an antitank landmine in November 2022. Along with his wife, Valeriia, he reflects on life after the frontline and his big plans for the future. Ukrainecast presenters are Victoria Derbyshire and Vitaly Shevchenko.

[Clip]

VITALY-听听听听听听听听 Several months after the start of the full-scale invasion you were badly injured while travelling back to the frontline. Can you tell us what happened?

SERHIY-听听听听听听听听 [Via an interpreter] Yes, it happened ten months into the full-scale invasion and I had been on the frontline throughout this time. But from time to time we were given an opportunity to relax, to get away from the frontline, around 3kms deep into Ukrainian territory. And that鈥檚 when it happened. I was returning from this break and heading back to the frontline when I drove over an antitank mine. That road was used by us many times before, and it was safe, so most likely the mine was put there during the night.

VITALY-听听听听听听听听 Valeriia, when you saw Serhiy in hospital what went through your mind? Were you happy that he was alive? Were you shocked that he had been injured?

VALERIIA-听听听听 [Via an interpreter] I think my first thought was just relief that he鈥檚 alive, because by the description of what happened to him it was not obvious that he would ever regain consciousness, that he would be reacting, that he would be hearing. So, I come to this hospital and I see my beloved person full of different pipes, totally unresponsive, and that was the most scary. So, just a relief that he is with us.

VICTORIA-听听听听 Do you have any memory, Serhiy, about that time in hospital when you regained consciousness?

SERHIY-听听听听听听听听 My biggest memory is the voice of my wife, Valeriia. And that鈥檚 what kept me fighting. Until then I only had nightmares, terrible dreams in which I was being demolished, destroyed, chewed over. And the light in regaining consciousness was her voice; and this is what kept me fighting because I wanted to go back to her, to fight through this to be with her. And I couldn鈥檛 speak because I had a pipe down in my throat, but that鈥檚 what kept me going and gave me strength.

VICTORIA-听听听听 So, when you came round, when you came out of the coma you could hear your wife鈥檚 voice and you knew you couldn鈥檛 see her.

SERHIY-听听听听听听听听 I couldn鈥檛 see her and I couldn鈥檛 reply to her. It was really hard. In intensive care her visits were only allowed to be 15 minutes a day, and I was really looking forward to those visits by my wife.

VICTORIA-听听听听 You鈥檙e both talking to us from the United States,听 Serhiy, where you鈥檙e having treatment. Can you tell our listeners how that鈥檚 going?

SERHIY-听听听听听听听听 Yes, I鈥檓 receiving treatment from the Revived Soldiers of Ukraine Foundation. It鈥檚 a charity that has been treating Ukrainian soldiers since 2015. I have undergone an operation on my eye. The operation itself was successful, but unfortunately once they opened my eyes the cornea was dead. And I also need to undergo another operation on my leg which will enable me to walk. Without this operation the doctors say I won鈥檛 be able to ever walk again.

VICTORIA-听听听听 How do you both rationalise what has happened to you, Serhiy?

VALERIIA-听听听听 It鈥檚 bad luck. There is no destiny or predestination in what happened. If your beloved is doing a dangerous job, if he鈥檚 deployed on the frontline this is what can happen. Things happen.

VITALY-听听听听听听听听 What next? What鈥檚 your plan? Are you planning to come back to Ukraine?

SERHIY-听听听听听听听听 I have so many plans that one lifetime isn鈥檛 enough for all of them probably. I definitely will go back to Ukraine. That鈥檚 my country; I fought for it, I sustained a wound for it. And I do plan to launch two organisations: a charity to help wounded veterans, and also a non-governmental organisations to help adopt wounded veterans in civilian life and build infrastructure to facilitate their life after the war.

[End of clip]

EMMA-听听听听听听听听听听 And if you want to hear Serhiy and Valeriia鈥檚 whole story you can find Ukrainecast on 麻豆社 Sounds.

听听听听听听听听听听听听听听听听听听听听听听听听 Thank you so much for listening. If you want to get in touch with us about anything you鈥檝e heard on this week鈥檚 show you can email accessall@bbc.co.uk. We鈥檙e on X, formerly known as Twitter @麻豆社AccessAll. Or you can send us a written message or a voice note on WhatsApp. Put the word Access at the start and send it to 0330 123 9480. Catch you next week. Goodbye.

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